I have just caught up with the recent dispute about the content of HU.
As a result I am interested to hear from others what they want from the site.
My own reason for joining this community was to gain a greater understanding of what was happening to me following my diagnosis of RA and to lessen the isolation that I was feeling from the effects of my illness.
Initially I contributed quite a bit to the site and found it to be informative and interesting. Many members had aquired years of experince of managing RA and associated problems and it was useful to pick people`s brains. However I was always mindful of the fact RA affects us all differently. I felt at times some people projected their own experiences on others quite strongly. I did feel at times that there was a strong almost evangelical element. What I would describe as the stay positive brigade which it felt to me had little time and or respect for other conceptual frameworks/ responses to dealing with this illness.
Rather like there is one way of doing this and its my way.
I would like our site to be more open and respectful of each individual journey with RA. I would like us to be equals.
I think we should respect how people are feeling emotionally and allow them to express themselves without trying to influence and change how they feel that they are experiencing the disease. Sometimes I felt counselled when I had not asked for this and only wanted to be accompanied. This led me to wonder whos needs were being met.
Surely we can talk about our own experiences with some humility and with a willing ness to reflect on how others are currently feeling and coping.
I dislike prescriptive answers from so called expert patients.
No body is the same. Everybody has a unique mind, body and soul ( if you believe in the spiritual.)
This should be respected.
Regarding the controversial blogg. The only thing that would be wrong as I see it would be deliberating misleading others or being malicious or advertising services.
Anyone on HU has the absolute right to express their opinion about treatment for RA ranging from spiritual healing / EFT to biologics. It is fundamentally wrong to try and censor it.
Indeed it is important that it is aired so that the pros and cons can be debated freely and respectfully ( ie not calling views contrary to our own sick )
People can then draw their own conclusions and ultimately choose for themselves..
What do you think ?